Preventative ovary removal hereditary link

[Mirrorplace]

Just wondered if people on this site may have experience of family members deciding to have elective surgery for removal of their ovaries based on possible hereditary links of ovarian cancer. I myself have ovarian cancer, and my sister and cousin are considering surgery to reduce their risk. An aunt and cousin also had it. Thanks in advance.

[ZenaJ]

If you get a BRCA test you can get help from the hospital. I had the test and was given letters for my family to take to their GP's to have the test, then offers of surgery would come depending on the results. My daughter would have had a full hysterectomy and mastectomy free on the NHS if she was positive BRCA. Luckily, she was negative. My son couldn't decide if he wanted to know or not and other family members were all clear.

[Mirrorplace in reply to ZenaJ]

My results came back as not being BRACA 1 or 2, or lynch syndrome (which was suspected due to other close relatives also having had prostate, kidney and stomach cancers as well as the cases of ovarian). I was told I am BRACA wild type, plus my tumour was identified to have HRD. Doctors have said the risk is moderate and it is entirely up to family members whether they want to go ahead with preventative surgery. It's a difficult decision. Thank you for sharing your family situation, it's good your daughter's results were negative. I have a sister, 2 daughters and 3 sons. As my results don't show BRACA it's not a clear cut decision. Thx ZenaJ. Xx

[Maldive]

I myself tested positive for BRCA 2 in November 2018, I went to see a breast consultant in December 2018 and had decided to go ahead with preventative surgery, I was due to be listed for surgery in March 2019 along with seeing a gynaecologist consultant on 3rd March 2019 for a hysterectomy. Unfortunately I was admitted to A & E on 22nd February 2019 and diagnosed 24hrs later with stage 4 HGS ovarian cancer. I would advise anyone to be tested and have a serious conversation with breast and gynaecology consultants, even if it’s only for regular screening. My cousin also tested positive and had a hysterectomy in March 2019, my eldest son is positive my youngest isn’t old enough to be tested. Good luck to you and your family. Dee xx

[Mirrorplace in reply to Maldive]

Thank you so much for sharing you and your family's situation. I really do wish you and them well. Much love xx

[lesleysage]

Hello Mirrorplace, unlike ZenaJ and Maldive, I have no personal experience, but think that both Ovacome and Ovarian Cancer Action have useful information on this. Ovacome's helpline is 0800 008 7054 and, I think, they work with OCA on the hereditary aspects of oc. Warm wishes, L x

[Mirrorplace in reply to lesleysage]

Thanks ever so much, we will have to look into that. Warm regards to you too. Xx

[Realistic]

I have to say l had the test and was clear, but my aunt & grandma both died of advanced breast cancer on my Mother's side.Personally if it were me having ovarian cancer l would have whatever it takes to prevent cancer.l actually had an hysterectomy in my late 30s but they didnt take my ovaries which really was a bad mistake.But hindsight if only. Good luck in your future we can do this. Love & hugs SheilaFxxx

[Mirrorplace in reply to Realistic]

It's awful isnt it, it all happens so unexpectedly. Over 10 years ago I had a consultation in relation to my risk, following my mum's stomach cancer. It was suggested then that if I wanted to come back to them and request preventative surgery (hysterectomy) I could do that when I had gone through the menopause. Unfortunately with the busyness of life plus covid interrupting the 3 yearly endoscopies I had been having as surveillance, I never got round to it. Hence the OC diagnosis last year. Thanks for your reply. Xx

[Realistic in reply to Mirrorplace]

Such a great shame, l was never given the option when l had my original hysterectomy if only ld know the risks. Good luck stay well& always positive and if ever your not hapoy get a second opinion. Love SheilaFxxx

[Trickysite]

I found out I was Brca2 in the same month I was diagnosed with stage4 Hgs oc, having had Breast cancer 20 years before. My sister was almost certainly BRCa having had a rather similar incidence of disease. Both my sons have tested negative for BRCa, a miracle. One of my nieces tested BRCa and has had a hysterectomy and a double mastectomy in her forties. A brave and empowering decision.. my heartfelt best wishes to all in this predicament. I am 18months since diagnosis and off on a. Cruise this week. May we all grab at the best of life. Xx

[Mirrorplace in reply to Trickysite]

Thank you for your reply, and sharing where you and your family are at. Enjoy your cruise! We just booked one (our first ever) going in January. Xx

[monkeytwo]

Hi, although I read people's posts I never comment on any of them. This however is too important. I have well I'm hoping that's had stage 3 ovarian cancer and I'm only 44. Mine is not hereditary and I have no idea what has caused it. Nothing is worth the risk of this and as oc runs in your family if I were your sister and cousin I'd have the surgery without a seconds hesitation. x

[Mirrorplace in reply to monkeytwo]

Thank you so much for replying, yes it is such an important issue which sadly affects many families. Take care. Xx

[Kblaisel]

I’ve heard that the latest suggestion is to have the Fallopian tubes removed as recommended if BRCA and suggested for women who are done child-bearing instead of a tubal ligation, because most ovarian cancer is HGS and begins in the Fallopian tubes.

[Mirrorplace in reply to Kblaisel]

Hi, thanks for sharing that information. Ironically I had a sterilisation, clips added to my tubes, back in 2005. Xx

[patricia54053]

3 of my sisters had ovaries removed because myself and another sister had ovarian cancer ,we got tested for the brca gene ,3 of us have it brca 2

[Mirrorplace in reply to patricia54053]

I'm sorry to hear all 3 of you have had to face this. Thanks for replying, wishing you and your family well. Xx

[delia2]

Hi. I found out I had a PALB2 mutation after my debulking surgery. My sister and daughter have it too. That daughter had her tubes and ovaries removed and the younger one had just her tubes removed. My sister had already had hers removed. In the US many doctors seem to advise having the tubes removed earlier and keeping the ovaries until menopause but it varies.

[Mirrorplace in reply to delia2]

That's interesting that that approach is taken re fallopian tubes on their own. We are all in need of guidance for our families in these matters. Thx for replying, take care xx

[delia2 in reply to Mirrorplace]

It’s because they think HGSOC starts in the tubes and that estrogen from the ovaries is important to bone and heart health—but that has to be weighed against risk. Xx

[Mlm65]

I’m RAD51 positive. I was told I have to wait until my forties to do the surgery, my doctors said I’m too young to do an ooforectomy (I’m 37 right now) my mom was diagnosed with ovarian cancer at 64. So I’ll wait until I’m 40, in the meantime they are doing ca125 levels and ultrasound every 3 months

[Mirrorplace in reply to Mlm65]

I'm sure you feel them monitoring you is a positive step. I think it's good that there have been more breakthroughs in treatment in recent years but its still a difficult cancer to keep under control. The decision of taking the leap and going for elective surgery is not an easy one for sure. Thanks for replying I wish you well. Xx

[Goodgirl98]

we lost 2 aunts on dads side to OC 12 years back but never thought to get genetic testing done. Now I have OC at 45 years of age and tested brca1 positive. I had a family call with all my cousins (I am only child) and shared all the information with them. One of them completed the testing and did a hysterectomy couple of months back after testing brca positive. Others are also planning to get tested and have initiated it in their respective countries. If I had known about this option, I would have done it in a heartbeat as well; one of my biggest regrets that I did not stay well informed.

[Mirrorplace in reply to Goodgirl98]

I'm sorry to hear, like many of us on here, that you have had to deal with this horrid diagnosis. Wishing you well in your treatments and wishing your family well too xx

[Barmycharm]

I found out that we have RAD51 gene after I was tested following my OC surgery. Subsequently my sister and daughters have been tested. My sister tested positive and had oophorectomy eaglet this year. She’s in mid fifties and very glad she’s had it done.

[Mirrorplace in reply to Barmycharm]

Thanks for replying, it sounds like it many are glad they have taken that decision like your sister did. All the best xx

[Leniko]

yes, I would do it if need be. Anyone at high risk that wants a family should harvest eggs.

[Mirrorplace in reply to Leniko]

Thank you for your reply, I guess that is a consideration for younger women yet to start a family. X

[Summergold2]

personally I would. but it is n individual decision

[Mirrorplace in reply to Summergold2]

Thank you for your comments, it isn't easy, especially when 'Braca Wild' type is mentioned as opposed to Braca 1 or 2. X

[Mirrorplace]

I just wanted to thank everyone who responded to my post. My sister has come over to visit from USA and she as well as my cousin are very grateful for your comments. It has helped to affirm their decisions in going ahead with the surgery. X